Brain Injury Association of Massachusetts Blog

As a parent to a child with a brain injury, we cringe when we hear “she/he looks great”. Unlike many other disabilities a brain injury is invisible. It is both a blessing and a curse.

When I share a picture of Isabella and I hear “she looks great” I automatically feel the need to explain all that a picture doesn’t show. Brain injuries are so deceiving because they are invisible. Seeing Isabella in a picture you wouldn’t know the constant struggle that she has. Isabella looks like a beautiful happy little girl. Isabella has her moments but truly her life is a constant struggle.

What you don’t see in a picture is the debilitating anxiety that prevents Isabella from being able to function. You won’t see the constant internal struggle Isabella has to control her own body and mind. That struggle has led to the low self-esteem that can’t be seen. In a picture you don’t see the moment to moment struggle to be safe.

What you see in a picture is a beautiful little girl who in that very second is happy and/or smiling. Just because Isabella looks great in that moment doesn’t mean that her brain is better. It simply means that in that moment she was happy. If only all things were as they seem.

“Just because a person smiles all the time, doesn’t mean their life is perfect, that smile is a symbol of hope and strength” Lauryn Hill

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication

Join us for the 1st Annual Walk & Roll for Brain Injury on Sunday, September 27th 2015 at Framingham State University.The Annual Walk & Roll is both a celebration and a fundraiser for the local community. It offers individuals and teams a chance to honor loved ones, connect with the brain injury survivors, and to provide brain injury awareness. The funds raised will enable BIA-MA to create a better future for brain injury survivors and their families.

Brain injury can have a significant effect on survivors and their families. Participating in the Walk & Roll for Brain injury will enable BIA-MA to provide: Prevention Programs, Legislative Advocacy, Education, and Support for brain injury survivors, caregivers, and professionals.

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How often have we heard someone say to us “one day at a time”? How often have we said it to someone else? It wasn’t until Isabella was a year post Acquired Brain Injury (ABI) that I truly understood the concept. I remember having plans that at one year post everything would be better. I thought that we would be “back to normal”. What I found was that one year post we were pretty much in the exact same spot we were the prior year. Yes there were improvements however there were also a lot of other issues just coming to the surface. Once I learned to truly live one day at a time, I found a huge weight was lifted off me. Two things that I had to learn in order to live one day at a time were:

Let the expectations and worries of the future go. The unknown is terrifying. What will I do when Isabella is bigger and stronger yet still aggressive? Will Isabella’s dreams be achieved to a level where she is happy? How will we overcome her debilitating anxiety? Where will Isabella be cognitively, emotionally, psychologically a year from now, a month from now, a week from now? I started to realize that I had to have faith that the work I put in today will help Isabella in the future tomorrows. All I can do is try my hardest and give it all I have today. I know I did everything possible and that is all I can control. I had to let the worries of tomorrow go.

Financial issues and bills will always be there. I remember staying up late at night constantly worrying about how I would pay this bill or that bill. I would have income spent long before it even appeared. What I had to learn was that worrying about money wasn’t going to change anything. It didn’t make money appear. All it did was cause unnecessary stress. I came to the realization that what I could do was actively work the resources that I had. I could plan for today and I had to have faith that the rest would work out.

None of us know what the future holds. Learning to live one day at a time has dramatically changed this journey. I have learned that I can’t plan for tomorrow. I can’t plan for a year from now. What I plan for is to do my best today to give Isabella hope for tomorrow. I have to have faith that my best will be enough.

“She stood in the storm and when the wind did not blow her way, she adjusted her sails.” Elizabeth Edwards

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication

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August is the month where Isabella will officially have a brain injury longer than she hasn’t had one. I can honestly say that I have dreaded “this day” since her Acquired Brain Injury (ABI). I knew that being 4.5 years old at the time Isabella got sick, “this day” would approach sooner rather than later.

As the day gets closer, I am coming to the realization that certain things will always be. Isabella’s debilitating anxiety and aggression isn’t going to go away. It will always be there sometimes much worse than other times. This is how Isabella will be post ABI and it’s not going to change much. My hope is that by continuing to work with her, maybe just maybe it will help.

As the day gets closer, I am coming to the realization that her dreams and goals will be altered. It is heartbreaking to think that her ABI has robbed her of these things. My hope is that Isabella will find happiness on an alternative path. Isabella can still aspire to be whoever she wants to be, however, her life will be altered based on her abilities.

Last week, after a horrible day, we snuggled in our Hyperbaric Oxygen Chamber. While in there, Isabella taught me how to make shadow puppets and we had so much fun. What I realized is that the dreaded day doesn’t change anything. Isabella’s brain injury doesn’t define her. It is a part of her. This beautiful girl whom I love more than life itself is amazing. Every day is not great and that is ok because every day that I am given with her is a blessing.

“Accept what is, let go of what was and have faith in what will be” Sonia Ricotti

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 9-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication

As a parent to a child with a brain injury each day presents itself with blessings and challenges. We have learned that in an instant it can all change and never be the same. Some days are more successful than others. Yet each day I make sure that I tell Isabella these five things:

You did a great job. I always tell Isabella she did a great job regardless of how much aggression and violence there is in the day. I tell her every night as she gets tucked into bed. Isabella has no control over her emotions, mood and behavior. She has severe memory deficits. Isabella tries so hard every day and for that I am forever grateful. To me trying is what counts and she tries so hard. Our survivors all have shining moments throughout the day no matter how small they maybe. They need to know that we recognize the hard work that they are putting in.

You are brave. I tell Isabella this every day because to her the world is scary. She has debilitating anxiety, hallucinations and sensory overload. Isabella struggles with things that we all take for granted. No matter how scared she is or how terrifying the world seem to her, she tries. That is bravery. Our survivors are incredibly brave to endure all that they do every single day. They need to know that we see them as brave even if they don’t see it themselves.

I am proud of you. I tell Isabella this every day because she continues to inspire me. She woke up out of a coma in the state of a newborn. Isabella fights so hard to regain her life. Every task that she does is amazing. My daughter wasn’t supposed to make it through the night and yet she did. Isabella is walking, talking, learning to read and so creative. Our survivors are amazingly resilient and should hear that others see it too.

You are smart. I tell Isabella this many times throughout the day because she thinks if she can’t remember something or she isn’t safe that makes her dumb. Isabella is smarter than she realizes and wise beyond her years in some areas. Our survivors need to know that just because something takes them a while to understand or “get” it doesn’t make them dumb. They are incredibly smart and need to hear that.

I love you. I tell Isabella this every chance I get. When she was dying I wondered if I told her enough. I knew I did, however, when you have watched your child dying it makes you realize just how precious life is. Our survivors need to know that we love them no matter what. They may not be who they were but we love them just as much if not more.

As a parent we want so badly to help our children regain their lives. There are so many parts of recovery that we can’t control. What we can control is what we say to them. We can be instrumental in helping build their self esteem.

“Promise me you’ll always remember… You’re braver than you believe, stronger than you seem, smarter than you think and loved more than you know.” Christopher Robin

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication

As a parent to a child with a brain injury, most of us have thought that we were “in the clear” when our child survived the brain injury. It’s unimaginable to think that they could survive only to later gain their angel wings. Since February my support group has had that happen 8 times. That is 8 children gone too soon; 10 children in all. 10 sets of parents left devastated and our community heartbroken at the loss of yet another child. With each loss we are reminded that it could be any of our children at any time. Tomorrow is not guaranteed for any of us.

According to the CDC, 138 people die every day from brain injuries. That is 138 people taken too soon. That is 138 people who leave behind devastated family and friends. Brain injuries are a global epidemic. Here are 4 things that you can do to help raise awareness:

Educate others by sharing your story. No one thinks a brain injury can happen to them (or their family) until it does. Your story may help someone else from having to deal with this life altering injury.

Contact your local Brain Injury Association to find out how you can help locally. If everyone got involved imagine the impact that we could have.

Take precautions: wear a helmet when riding a bike, motorcycle, skateboard, rollerblades or scooter. Wear a seatbelt when in a car. Don’t drive while under the influence. Limit distractions when in the car. Not all brain injuries can be prevented but eliminating the things that put you at risk will help.

If something doesn’t seem right with your survivor seek medical help immediately. You know them better than anyone. If your gut instinct says something is wrong there probably is.

As a parent to a child with a brain injury, the thought is always in the back of my head that something could happen to my child. Knowing how fragile life is both a blessing and a curse. I chose to enjoy each and every day to the best of my ability. I look for the positives and I celebrate the small joys in life. Every night before I go to bed, I tuck Isabella in and kiss her once more. Then I thank God for the blessing of another day and I pray that tomorrow I will be given another one.

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication

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Advocating for your loved one with a brain injury is both exhausting and yet rewarding. You get thrown into this journey and it is literally sink or swim. Advocating is necessary to ensure that your survivor gets the right treatment, services and benefits. It can be intimidating at first to stand up to those who hold so much power. Here are four tips to help you:

Research. The internet is key in helping you learn as much as you can about brain injuries, therapies, treatments, doctors and such. Remember every brain injury is as unique as the person who has one. However the more knowledge you have the better. It is my research that got Isabella Hyperbaric Oxygen Treatment. That one treatment has made such a significant impact on her recovery.

Apply early. Start trying to get benefits early knowing that most likely you will be denied at first. Appeals can take a while so the sooner you start the better. Always appeal decisions if denied. I have won several appeals and you may be able to as well.

Same vision. Make sure that the medical and therapy team’s vision is similar to yours. There will be times on this journey that what you foresee and what the team foresees is different. Adjust your team accordingly. It is ok to switch providers. I even encourage it because that “fresh set of eyes” can make all the difference between moving forward and standing still.

Speak up. Remember you know your survivor better than anyone. Ask questions, get other opinions and if something doesn’t feel right, it probably isn’t. You are the voice for your survivor.

On days when the battles seem never-ending look at your survivor. You played a big part in getting them where they are in recovery. I look at Isabella and I see how hard she fights to regain all that she has lost. Isabella is so brave in a world that is very scary for her. She is the reason I do everything that I do.

“The least I can do is speak out for those who cannot speak for themselves.” Jane Goodhall

Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.